[Would you take Seroquel if you knew you’d be risking
your eyes? Nancy tells her story of Seroquel withdrawal, of the devastating toll
it’s taken on her life … of how it stole her sight. This is the truth of a drug
now given out so casually that it’s used as a sleep aid, like a prescription
Sominex.]
If you take Seroquel, your eyes are one of the risks. Is it
worth it?
by Nancy Rubenstein Del Giudice
January 30, 2013
The topic of this article is Seroquel withdrawal: the process of withdrawal and
the consequences of having taken this particular chemical for over ten years. In
my case, essentially since it came on the market in 1997. In the thunder of
stories breaking loose regarding psych drug withdrawal, I am hearing next to
nothing about Seroquel and I feel a moral obligation to offer up my story for
the common good. Be forewarned; it ain’t pretty.
In 2009, I discovered, as countless people have, that I had been massively
misled. I learned that over a decade of suffering (including the loss of my
children over suicidality) was not, in fact, suffering from an actual disease,
but instead, the “side effects” of the drugs purported to treat it. The story of
this betrayal by the medical community may be one for another time. Let me stick
to the subject of Seroquel, and cut directly to the chase.
For many years I took 1,500 mgs of Seroquel as part of my cocktail. By 2009, I
was down to 300 mgs of Seroquel and 2 mgs of Ativan. It was at that point that I
got “fired” by the mental health system of Asheville, North Carolina. It was not
an acceptable choice to wean off the rest. My psychiatrist said to me, “People
like you don’t get off meds.” I didn’t believe her. I had been doing a lot of
research on my own. Since I was already an activist (being lied to often tends
to politicize people), I had support within the psychiatric survivor community.
You know who you are. Thank you.
Withdrawal Result: An Emergency Unneeded Hysterectomy
I took my last dose of Seroquel in late November of 2010. Two weeks later I was
rushed to the hospital with severe abdominal pain and bloating. If a competent
neurologist had been there at the emergency room, he might well have remarked to
the doctors who directed me to have a radical hysterectomy: “You idiots! She
just got off a drug that acts on neurotransmitters. Ninety seven percent of
neurotransmitters are in the gut. This is drug withdrawal.” However, no
neurologist was on the scene. Just me in severe pain, my partner Jim in extreme
fear, and a bunch of men in white coats who project the certainty that they know
everything (aka doctors). I had an unnecessary hysterectomy.
… And Then a Damaged Immune System
A month and a half later, visiting Alaska’s “neighboring state,” Hawaii, minus
my uterus and ovaries, the same thing happened, and my health began a downward
spiral. My sightseeing on the beautiful island of Maui was largely restricted to
urgent care centers and the one hospital emergency room. I had highly resistant
bacterial infections (a good clue that my immune system was not functioning
well) and extreme reactions to food and chemicals (like cosmetics, alas).
… And Then Food Allergies
The best four hundred dollars I have ever spent (not covered by insurance, and
Why is that?) was a food sensitivity blood test. Bingo! I was off the charts on
food. Dairy, grains (not just gluten), yeast, corn, soy. Yes, all my vegan
dreams down the drain. Oddly … or perhaps not … I received this information as
the best possible news. This was something I could act upon. Loving creative
challenges, I began writing a cookbook. My first title (suggested by Jim) was
I’m Allergic to Everything Cookbook. Now, a year later, the title may well be,
No Grains, No Pains. Post Seroquel, the issue of sustenance was relatively
easily addressed.
.. And Then Insomnia
The issue of insomnia, to put it oxymoronically, was a nightmare. For more than
a year I was lucky if I got three or four hours of sleep, and I went days
(nights, really) in a row with absolutely none. I could not yawn. I was never
tired. My body was fixed in a state of fight or flight that created severe
inflammation, agitated exhaustion, and severe irritability. There were periods
of crisis, but the clumsy interventions only made things worse—Ambien, which did
not work and Haldol, which gave me 24 hours of uncontrollable facial movements.
Successful Treatment: Nutrition, Herbs, and Supplements
My primary care provider is an advanced nurse practitioner at a “progressive
medical center.” Avante specializes in naturopathic medicine. My treatment has
focused on amino acids, vitamins, medicinal herbs such as passion flower,
bio-identical hormone replacement, and melatonin.
I also have consulted regularly with my friend Ken Thomas, author of the book,
“Side Effects; The Hidden Agenda of the Pharmaceutical Cartel.” Ken started
Nurses for Human Rights and has worked tirelessly to help people recover from
the harm caused by psychotropic drugs.
As of June, 2012, I am sleeping six or seven hours fairly regularly, although
any stress whatsoever can easily set me back. Yawning brings me great pleasure
and I feel unexpected gratitude. Suffice to say that sleep is the body’s
greatest treasure and the biggest challenge in both preserving mental health and
surviving Seroquel withdrawal.
… And One More Devastating Effect of Withdrawal
The last issue I will discuss with you, patient reader, is the one that seems
the least heard of, but it’s the issue that has changed my life forever.
In 2010, while weaning off Seroquel, I developed photosensitivity.
Progressively, I lost the ability to read, look at computers, TV, and movie
screens. In July 2011, I could no longer keep my eyes open long enough to drive
safely.
Several eye doctors told me there was nothing wrong. It was suggested in writing
that my eyes got worse as I became more emotional.
Last May 2012, The Boston Center for Sight captured microscopic images of
“striking damage to the corneal nerves.” It’s called Corneal Neuropathy, which
is considered progressive and permanent.
The label on Seroquel has, for two years now, stated that patients on Seroquel
should see their eye doctor every six months. It lists as a side effect, “eye
pain”. What the label doesn’t say is that forty percent of the body’s pain
receptors are in the cornea.
It’s Not Seroquel Withdrawal. It’s Seroquel Damage.
In summary, Seroquel withdrawal is a misnomer. The damage my body has sustained
as a result of ingesting this toxin is an unfolding phenomenon of unknown
destination.
Drug companies are unlikely to fund studies on a subject that could result in
their product being taken off the market. I don’t see the FDA as an entity
separate from the drug companies.
In my experience, after researching this topic for over two years, the only book
out there worth having is How to get off Psychiatric Drugs Safely, by James
Harper, available through The Road Back website. Regarding the supplements
recommended, which are now sold separately to avoid conflict of interest, I
would just caution that I don’t think the Omega 3′s are strong enough, that the
Body Calm (which is Montmorency Cherry) can be agitating to some people who may
be in an advanced state of oxidative stress. My concern with their probiotics is
that they may not be appropriate for everyone. In people with small bowel
overgrowth—an estimated 17-30% of the population—most probiotic formulas fuel
excessive bacteria. There are similar problems using some probiotics for people
with Irritable Bowel Syndrome, Celiac Disease, Crohn’s Disease, and Ulcerative
Colitis. For people with these conditions, there are companies that make
diet-specific probiotics.
Overall, for the most comprehensive information about the science of how these
drugs act, what withdrawal can be like, and how to get through it, James Harper
is the best truth teller out there.
It is critical to keep in mind that every person is different. Three things are
always the same:
Doctors know nothing about withdrawing from psychotropic drugs,
There is no existing research, and
There is no safe place of refuge.
As bleak as this sounds, it is the truth.
My Hopes
What I hope is that my story will coax out of obscurity some of the others like
myself, who took the bait when Seroquel first came out, who followed the
recommended high dose regime for over ten years, but who have been Seroquel-free
for more than a year. These accounts will help the millions of people who now
believe that “Seroquel is the new Sominex.”
There will be two distinct groups of people to answer my call. One group will be
people who had actual symptoms of mania or psychosis before they were “treated”
with psychotropic drugs. The second group, the one to which I belong, is the
group of people who were experiencing depression during a difficult life
transition, such as divorce, mid-life crisis, death of a loved one, or other
trauma, and were misled into believing they had a chemical imbalance that
required medication, “just like a diabetic requires insulin.”
Either way, these two groups have important stories. Let us fill this silent
abyss with the voices of experience.
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